Survey: Caring For A Child With Rare Genetic Disorder During COVID-19

April 24, 2020

Families with a rare genetic disorder such as Sanfilippo Syndrome will have a different experience than others during the COVID-19 emergency. Scientists at UCLA are working directly with families to better understand specific challenges and when they occur by conducting a survey of parents with a child with a rare genetic disorder.

The simple survey takes takes 10 minutes to complete and will help scientists better address the unique needs of families during this unprecedented time.

The purpose of the research survey is to learn more about how the coronavirus (COVID-19) outbreak has affected parents caring for a child with a rare genetic diagnosis.

“As a community, this is a wonderful opportunity to provide insights that help inform the research, scientific, and clinical communities about the unique situations of people living with rare genetic disorders,” said Foundation Chief Science Officer Cara O’Neill, who is also mother of a daughter with Sanfilippo Syndrome. ” I took the survey online and it was easy.”

Fill out the survey to share how the coronavirus (COVID-19) outbreak has affected caring for a child with a rare genetic diagnosis.

This research is conducted by Dr. Shafali Jeste of the Pediatrics and Neurology and Psychiatry and Biobehavioral Sciences Departments at the University of California, Los Angeles, (UCLA) and is completely voluntary. You can stop the survey at any time. There are no right or wrong answers; simply answer to the best of your knowledge.

“Cure Sanfilippo Foundation is proud to support the collaboration behind this research by sharing it with the Sanfilippo community so the voices of families with MPS III, of all types, are represented,” said Foundation President Glenn O’Neill.

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